By Emily Leclerc | Waisman Science Writer
At a glance
- The primary treatment for PKU (phenylketonuria – a rare genetic metabolic condition) is a low to no protein diet.
- In the beginning of May, Waisman’s team of dietitians held a Spring themed event where they cooked several low-protein recipes and brought in a lecturer to teach container gardening.
- These events help support individuals with PKU in sticking with their diet by teaching different ways to adapt a variety of recipes.
- The event makes space to make connections with others who have PKU which can be very important for individuals with rare diseases.
- Recipes from the event
Springtime means blooming flowers, trees covered in green leaves, and warming weather. It is also the perfect opportunity to get together to cook and garden. The team of dietitians from the Waisman Center’s Biochemical Genetics Clinic decided to embrace the season and host a morning event with a cooking and container gardening class for individuals with PKU and their families.
PKU is short for phenylketonuria, a rare metabolic disorder that affects how the body processes the amino acid phenylalanine. If left untreated, it can lead to intellectual disability, neurological issues, and other health concerns. The primary treatment is adherence to a low-protein diet as phenylalanine is abundant in protein-rich foods. But sticking with such a specialized diet can be hard for individuals with PKU and their families, especially when low-protein alternatives can be difficult to find.
“We have been holding patient education events for some time and we often try to incorporate different education topics and themes,” says Lisa Obernolte, MS, RD, CD, metabolic dietitian in Waisman’s Biochemical Genetics Clinic. “Dietary treatment for PKU is so specialized that we like to provide education and support to help make it easier for people to successfully stick to the diet.”
Earlier in May, Obernolte along with two other dietitians, Therese Breunig, RD, CD, CLC, and Nikki Drilias, RD, CD, both metabolic dietitians in Waisman’s Biochemical Genetics Clinic, held PKU Fresh Start: Spring Gardening and Cooking at the UW Health East Madison Hospital Learning Kitchen. They had 22 attendees that included individuals with PKU and their support person or parent.
On the menu was low-protein adaptations of a caprese pasta salad, cucumber and cream cheese tortilla roll-ups, and a fruit salsa with cinnamon chips. Bright and fresh flavors perfect for the season. “The recipes were really good. They were a big hit with everyone including the attendees that didn’t have PKU,” Obernolte says. “The recipes were also relatively simple, so we hope it gave families something they felt they could go home and make themselves.”
To complement the food, the dietitians brought in an instructor from UW-Madison Extension to present and demonstrate container gardening. Not everyone has the space for a large vegetable garden. A few potted plants can present a yummy, space-saving alternative. Under the guidance of the Extension instructor, the participants got to plant and take home a tomato plant and basil, two key components of the caprese salad recipe.
“Our hope was that container gardening could be something attendees may want to try if they don’t have the space for a full garden at home,” Obernolte says. “Tomatoes and basil will grow all summer long, so they could use what they’ve grown to make the salad we made in class. We also hope that it promotes eating more fruits and vegetables, which are low-protein foods, and are also just good, healthy choices.”
Finding new and delicious ways to help individuals with PKU stay on diet is a core tenant of the dietitians’ classes but it isn’t the only one. And sometimes it might not even be the most important one. “We also want to connect individuals with PKU with others who have PKU,” Obernolte says. “It is such a rare disorder that, outside of these events, an individual may never run into someone else in their life who has PKU. Diet education is a great component of an event, but the feedback we often get is that individuals really value being able to connect with others.”
Currently there are no concrete plans for when the next event will be held, but the team has a lot of ideas for future themes and there is a rousing call for more from their patients and families. “There will definitely be more to come,” Obernolte says.